plznotals
Member
- Joined
- Apr 22, 2012
- Messages
- 14
- Reason
- Learn about ALS
- Country
- US
- State
- ny
- City
- queens
Hello All and thank you for taking the time to read my post. In the past few months I have gained so much respect for those living with not just ALS but any illness. It takes courage to deal with all that comes along with life on a daily basis. I pray for all of the diagnosed and the caretakers alike.
I am here because I, like many others are very concerned about my health and I will try to explain as clearly as possible without being too long winded. Ok, last December 30th, I noticed a strange, sudden weird headache, slight dizziness and then tingling in my hands and feet. I thought I was developing diabetes since my gp told me my sugar levels were a bit high. My toes tingled over the weekend and then I noticed my lower legs burning at night. Over the next few days I developed a creepy, crawly sensations in my arms, face, scalp and other places.
It was the nastiest feeling ive ever experienced. I noticed twitching EVERYWHERE, arms, legs, buttox, tongue, lips...even groin, rectum, you name it. I felt tenderness in my glands and everything. Then, the following week, while at work, I suddenly felt my left arm and leg get weaker! It stopped me in my tracks. I didnt fall or lose consciousness but it scared me to death!
I went to see my gp and explained all of my symptoms...which also included noticeable weight loss....Weighed 170 in September-October, but only weighed like 150 at the time. He said it did not sound like diabetes. He told me to go to the neuro and gastro docs. By the way, when he examined me, he said my glands were not swollen. All bloodwork was normal except for an ANA for Lupus. My gp said he didnt think it was anything but told me to also see the rheumatologist. I went to see the neuro who gave me a clinical exam, then an emg, ncv, transcranial doppler...all were negative. Gastro doc did endoscopy and colonoscopy and told me that all he saw was mild inflammation. He gave me prilosec and told me to come back. While all of this was going on, I would notice that in the mornings, my hands would shake a lot, I had no appetite and had to begin drinking Boost to make sure I got some calories.
Then, i noticed pain in my left calf, twitching increased....tingling continued and still no answers.. Went for mri's of brain, cervical, thoracic and lower lumbar....neuro said were normal. A few weeks ago, I started noticing that the weakness was moving to my right side. I can still lift things and have not become immobile, but the "weak" feeling is scary, annoying and very disturbing. There have been days when I walk down steps and it feels like my left leg will give out...never has. My left arm and leg still feel the same as it did several months ago, and the left bicep also feels weird in the belly of it. My feet and legs hurt at times...I feel sporadic pains throughout my body. There are times when I feel as if I may lose bowel control. It is not very bad these days, but several months ago it was horrible. I am on cymbalta...given to me by the first neuro I saw. I also take bystolic for hpb and was taking lipitor for cholestorol. Neuro told me to stop for a while.
I talked to my neuro again in May who did another emg/ncv and ordered more mri's which he said were normal. He told me to see a "neuromuscular" specialist in his office for his opinion. I went to see him and he ordered more bloods, did another emg/ncv and more mri's...and told me that all the tests looked good...including my clinical exam. He told me that the bloods came back normal...still sees the lupus antibody but didnt think anything of it. He said perhaps I picked up a virus that is inside the muscles causing me all of my symptoms.
SO..I know it may be annoying when people like me do all this explaining, but I am becoming a real mess over this. HERE IS A BIG REASON WHY....since the very beginning of all these symptoms, my girlfriend also began twitching, which she still has....HER MRI revealed some white spots....they told her that she has Hashimotos disease, which she never had before...and now she is telling me that her hands are tingling. It seems like every symptom I have or have had, she is having also. She has not mentioned any rectum discomfort, but has been complaining about the twitching, tingling hands and now pain in her feet. I am 42, she is 30. Before December last year, we were both healthy and active. Sorry for being longer than I wanted to be..but...does any of this sound like ALS? Could me and my girlfriend possibly develop ALS from a viral infection? Any opinions on this would be GREATLY APPRECIATED. THANK YOU SO MUCH.
CJ
I am here because I, like many others are very concerned about my health and I will try to explain as clearly as possible without being too long winded. Ok, last December 30th, I noticed a strange, sudden weird headache, slight dizziness and then tingling in my hands and feet. I thought I was developing diabetes since my gp told me my sugar levels were a bit high. My toes tingled over the weekend and then I noticed my lower legs burning at night. Over the next few days I developed a creepy, crawly sensations in my arms, face, scalp and other places.
It was the nastiest feeling ive ever experienced. I noticed twitching EVERYWHERE, arms, legs, buttox, tongue, lips...even groin, rectum, you name it. I felt tenderness in my glands and everything. Then, the following week, while at work, I suddenly felt my left arm and leg get weaker! It stopped me in my tracks. I didnt fall or lose consciousness but it scared me to death!
I went to see my gp and explained all of my symptoms...which also included noticeable weight loss....Weighed 170 in September-October, but only weighed like 150 at the time. He said it did not sound like diabetes. He told me to go to the neuro and gastro docs. By the way, when he examined me, he said my glands were not swollen. All bloodwork was normal except for an ANA for Lupus. My gp said he didnt think it was anything but told me to also see the rheumatologist. I went to see the neuro who gave me a clinical exam, then an emg, ncv, transcranial doppler...all were negative. Gastro doc did endoscopy and colonoscopy and told me that all he saw was mild inflammation. He gave me prilosec and told me to come back. While all of this was going on, I would notice that in the mornings, my hands would shake a lot, I had no appetite and had to begin drinking Boost to make sure I got some calories.
Then, i noticed pain in my left calf, twitching increased....tingling continued and still no answers.. Went for mri's of brain, cervical, thoracic and lower lumbar....neuro said were normal. A few weeks ago, I started noticing that the weakness was moving to my right side. I can still lift things and have not become immobile, but the "weak" feeling is scary, annoying and very disturbing. There have been days when I walk down steps and it feels like my left leg will give out...never has. My left arm and leg still feel the same as it did several months ago, and the left bicep also feels weird in the belly of it. My feet and legs hurt at times...I feel sporadic pains throughout my body. There are times when I feel as if I may lose bowel control. It is not very bad these days, but several months ago it was horrible. I am on cymbalta...given to me by the first neuro I saw. I also take bystolic for hpb and was taking lipitor for cholestorol. Neuro told me to stop for a while.
I talked to my neuro again in May who did another emg/ncv and ordered more mri's which he said were normal. He told me to see a "neuromuscular" specialist in his office for his opinion. I went to see him and he ordered more bloods, did another emg/ncv and more mri's...and told me that all the tests looked good...including my clinical exam. He told me that the bloods came back normal...still sees the lupus antibody but didnt think anything of it. He said perhaps I picked up a virus that is inside the muscles causing me all of my symptoms.
SO..I know it may be annoying when people like me do all this explaining, but I am becoming a real mess over this. HERE IS A BIG REASON WHY....since the very beginning of all these symptoms, my girlfriend also began twitching, which she still has....HER MRI revealed some white spots....they told her that she has Hashimotos disease, which she never had before...and now she is telling me that her hands are tingling. It seems like every symptom I have or have had, she is having also. She has not mentioned any rectum discomfort, but has been complaining about the twitching, tingling hands and now pain in her feet. I am 42, she is 30. Before December last year, we were both healthy and active. Sorry for being longer than I wanted to be..but...does any of this sound like ALS? Could me and my girlfriend possibly develop ALS from a viral infection? Any opinions on this would be GREATLY APPRECIATED. THANK YOU SO MUCH.
CJ